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Tuesday, August 30, 2011

Please explore these wonderful posts I have shared below about being special needs. The eloquence demonstrated by these bloggers has captured the essence of everything I strive to share about our special needs journey.

Play park for all Morgan's Wonderland. On LinkedIn Linking Cerebral Palsy group: "Morgan's Wonderland in San Antonio, Texas is awesome.
It is a play park for kids w/ disabilities. The kids get in free, It
includes wheelchair swings, padded and covered play areas, gym,
wheelchair car rides, sensory room, fishing and picnic facilities. We
took my son Sean, he loved it. It is all volunteers and community
supported. No affiliation, just a dad's perspective."

Monday, August 29, 2011

John has been
rising and leaving home around 5 am each Sunday for the past month. A
local college has scheduled John's IT services every Sunday morning
through the end of the year. The reason is to prevent disruption to
staff and students. It's a challenging schedule but he is happy to take
work when it is available.

He came home mid-afternoon and was greeted by the usual excitement by the boys who knew their fun was just beginning as they prepared for an afternoon swim and Riley's birthday celebration.

My boys spend the afternoon together.

Clearly, something was bothering him beyond the early rise and hard work he had just put in.

"What's going on?" I asked.

"I just spent the day in the NICU." John answered. "Today I was scheduled in the nursing area of the college and started with the fully functioning teaching NICU."

Of all places to land on the anniversary of Riley's traumatic birth which began our journey with two months of the NICU. What an uncanny, cruel circumstance to land him in one of the most distressful places of Riley's young life on the actual birthdate.

How strange life can be. If you recall, I actually chose to post a picture of Riley in the NICU yesterday having no idea where John actually was at that moment.

Ready for his birthday dinner wearing giraffe print.

If you gotta wear a bib - it should be really cool.My favorite bibs are birthday gifts sewn by Ms. Jeanine and Ms. Wendi.

‘RSV’ can severely sicken young kids

August 27, 2011

Although babies who are born before 36 weeks are at high risk of catching the respiratory syncytial virus, young children up to the age of four are also at risk.
Every year RSV affects between 4 million and 5 million children who are younger than 4 years old. In addition, more than 125,000 children are hospitalized every year from RSV.
Pediatrician with Lee Physician Group Tom Schiller, MD, said that RSV is a very common virus that has been around forever. Although the virus affects people of all ages, it can make young children extremely sick, he said.
The symptoms for RSV usually include a nasty head or chest cold, fever, runny nose, cough and wheezing, which are much like cold symptoms. Worst case scenario, RSV can cause lung disease, heart disease and cause a baby to stop breathing.
"It is a nasty little virus," Schiller said.
If a child is cranky, pulling at their ears or running a significant fever, Schiller said they need to be seen by a doctor.
Once the virus affects the child, it can occur over and over again.
"First time you get it is usually the worst," he said.
Schiller said after a child attracts the virus, they may wheeze with their next cold without it actually being RSV.
"It could happen for a couple of months," he said.
The symptoms can peak in small children between the ages of 2 to 8 months old. It can especially affect premature babies.
When the virus affects really small children, it goes down deep into their windpipes and causes inflammation and destruction, causing them to wheeze, Schiller said.
"Half of the kids that get RSV are later diagnosed with asthma," he said, adding that it can happen at any point.
RSV, he added, is the leading cause of lower respiratory tract infection in infants and young children.
The virus usually comes in outbreaks during the winter months, according to Schiller.
Although a sample can be taken from a young child's nose to run tests to see if he or she has the RSV virus, Schiller said they generally cannot act on the diagnosis.
A preventive medicine - synagis - can be given to the child to increase their immune system to help protect them against RSV. Schiller said the medicine is very expensive because it is a monthly inter muscular injection. Although it is expensive, it is cheaper than having a child go into the hospital, he said.
Schiller said the last vaccine that was created for RSV was in the 60s, but was later banned because it killed people, rather than helped them. He said research is still being done to create another vaccine to help with the virus.
With 80 percent of children in day care settings, the virus is easily spread through the simple touch of a hand.
"Hand hygiene is really the only tool you have to prevent it," he said about the virus.
RSV became a strong concern for Stacie Wiesenbaugh and her husband John Buck when their son was born early and was faced with many complications.
Wiesenbaugh had a very healthy pregnancy until she entered her 32nd week and had to have an emergency Caesarean section on Aug. 28, 2002 because her son Riley had suffered an in utero grade four massive brain hemorrhage.
Riley was born four pounds, six ounces.
"He had many complications due to the hemorrhage," Wiesenbaugh said. "We actually didn't think he was going to survive the first night."
A few days after Riley was born, he had to undergo surgery so a reservoir, a piece of hardware, could be placed into his skull so the doctor could remove the excess blood from occuring.
"The hemorrhage wouldn't stop," Wiesenbaugh said, which could have been deadly because when blood is not contained, it can cause extra pressure.
Due to Riley's size the problem continued, which involved another surgery to place another piece of hardware into his brain. The VP shunt, Wiesenbaugh said, was designed to allow the body to take care of the access fluid by itself.
Riley was released from the hospital two months after he was born, which was close to his actual due date.
Because of his condition, the family had to take every precaution they could to keep him healthy, which led to discussions of RSV.
She said they had to protect his compromised lungs, which were already receiving help from a respirator.
"He was high risk for picking up this virus," Wiesenbaugh said. "This kind of infection would land him back in the hospital easily and be life-threatening as well."
The hospital in Los Angeles told the family about the synagis injections to help prevent the possibility of Riley attracting RSV.
Once a month for two years Riley received the injection, which kept him safe from catching the virus.
"It was worth it because we didn't want to end up in the hospital," she said.
Although Riley will be 9 years old on Sunday, the family still practices prevention measures to keep the virus away. She said they kept him home when he was in a compromised state and did not allow people to approach and touch him. In addition, when they were at home, they were not shy about asking people to wash their hands before holding or touching Riley.
"Even though he is beyond the age of 2, we still are very careful," Wiesenbaugh said.
When she can educate others about the common virus she does by instructing them to wash their hands on a regular basis and sneeze and cough into the inside of their elbow so germs are not spread.
"It has been a long ride," she said. "This birth changed everything about our lives."
The parents were blessed with another son, Ronan, who is healthy and full of energy.
Wiesenbaugh said the progress Riley has made since he was born is amazing. He attends Rayma C. Page Elementary School as a fourth grader, where they began a special needs class for him, which has grown with other students since its inception.
"He comes home happy and they do everything they can for him," she said.
Due to many of his systems being compressed at an early age, Wiesenbaugh said Riley is nonverbal, developmental, visually and hearing impaired. He does not communicate through spoken word or sign language.
"The way that he will squeeze your hand will tell you if he is relaxed or stressed. Since he cannot walk or jump with joy, he will kick his legs rapidly in the wheelchair if he is excited," Buck said. "The pitch of his laugh can tell you if he is happy, scared or even in pain. If his sound (nonverbal) mimics yours in beat, pitch or tone he is in a communicative mood. In sum, it is his own language that we had to learn and we mutually learn given his impairments."

Wednesday, August 24, 2011

Seizure's
did not come every day or even every week during Riley's sixth year. When a seizure did arrive, it was an
Event. Occasionally it even meant
calling in paramedics and a trip to the ER to put an end to Riley's convulsions
when our own medications and interventions were not enough to help him.

One
day, driving my boys from one appointment to another, Ronan observed a
Walgreens drugstore. He explained to me
as we drove by the landmark in his matter-of-fact three year old manner:

“If I
go to Walgreen’s, I don’t have seizure’s!”

He had
put it all together!

He
recognized Walgreens yet the McDonald's next door to it went unnoticed. Not many three-year olds have seizure in
their vocabulary or need to consider how to manage the disorder. I laughed.
I cried. How sad that he had to
understand seizures. How amazing that a
three year old was planning how not to have seizures.

Friday, August 19, 2011

On Tuesday, the 16th, 9 am, after
giving myself a final shot of Nuepogen, I was hooked up to the machine which
draws the blood from my left arm, collects my stem cells, transferring them to
a bag, and replaces my blood back to my body (heated) through my right arm. I expected it to be like giving a blood
donation but soon discovered that it was a little more trying then that.

I was all set up on my lounge chair,
legs up, head back, laptop on my knees, books by my side and snacks.

I thought this would be a 6 hour
leisurely process, including movies, books and food; my body reacted otherwise.
Because calcium is being drawn from your
blood, you start to shiver, shake and tingle. It was a very strange sensation, which means
you need to suck on some tums and be hooked up to calcium. After awhile, that
tingling sensation turns into numbness, exhaustion and apathy. You feel as if your soul has been drained out
of you. As a matter of fact, you feel
just plain lousy. However, when I was
told that the bag is filled, the target has been reached and you are being
unhooked, I knew I would have done it again.

Throughout the process I held hematite stones in each one of my hands, with the intent of transferring them to my
brother's hands on the day of his infusion. I kept repeating to myself that this is going
work, that I am giving good, healthy healing cells to my brother. At the
end of the experience, I broke down in tears of relief: 1) because of the
realization of how much the people around me are suffering, and 2) knowing that
this bag of gold will soon give my brother new bone marrow, good health and
well-being.

Yesterday, the 16th, my sleeping
brother received the stem cells. The hematite stones were placed next to his
right and left hands. After 2 hours, when the process was done, I removed the
stones to put in the sun lit window, which practically burned a whole through
my palms. That blew my mind!!!

My brother, Brad, is feeling
reasonably well and now it is a matter of keeping him comfortable, in good
spirits and positive so that he will absorb the new cells. Prayer, meditation, laughs and love are the
daily requirements. Taking each day as
it comes is another. I am looking
forward to seeing what today brings. Shabbat Shalom, Salam, Peace.

Sign
up/recruit now for the U.S. Disabled Sailing Championship -Sept. 22-25
at Larchmont Yacht Club, NY . It will be a wonderful regatta and are
just waiting for the sailors to register. There is a novice fleet too, so if you know any rookies, please encourage them.

Sunday, August 14, 2011

As the horse breaks into a trot, six-year-old A.J. sits up
straighter, tosses his helmet-strapped head back and bursts into a
contagious giggle. His parents, Michon and Angel Chamorro, laugh from
outside the covered riding arena. Then, A.J. leans forward onto the
pillow that supports him in the saddle.

At Naples Equestrian Challenge, A.J’s time on the specially trained
horse, surrounded by certified instructors and volunteers, is a form of
physical therapy for his cerebral palsy. His parents say it’s worth the
drive from Estero to see his upper body strength, posture and vocals
improve. Plus, his dad says, he absolutely loves it. “Every time he
hears the word ‘horse’ or sees a picture, he’s pointing,” Angel says.
Each week, the program serves more than 100 children and adults with
developmental delays caused by disabilities ranging from cerebral palsy
and Down Syndrome to stroke and amputations. Another 40 to 50 riders
participate in mental health activities for autism, attention-deficit
disorder and more.
Melissa Caffey, Naples Equestrian Challenge’s former executive
director, says most participants are on scholarship and ride about 40
times a year. They are charged only $10 per half-hour session, although
it costs the program between $4,000 to $5,000 per rider.
Stacie Wiesenbaugh of Bonita Springs brings her son Riley Buck,
eight, to ride. He was born with a brain hemorrhage that caused cerebral
palsy, spastic quadriplegia, hearing and visual impairments, and other
complications that require him to be strapped to the horse. She
remembers their first visit. “The wind was really blowing,” she says.
“The smell of the barn hit him, and he started laughing hysterically and
wouldn’t stop. It was like this place was the right place for him.
There are very few opportunities for him to participate in anything and
enjoy himself.”
A.J.’s dad appreciates all the hard work put in by the 270 volunteers
each week. “I think it’s nice to see people take time out of their
lives to help kids that need it,” he says. “It’s a great program. I hope
it never ends.”
Naples Equestrian Challenge is one of so many worthy charitable
organizations throughout Collier and Lee counties. The list on the
following pages provides the goals of 267 organizations and offers ways
for you to get involved along the Gulfshore.—Denise Scott

Many of my younger years were spent on an Angus Farm called Rocky Forge Farm in MD.

As a junior member of the Angus Cattle Association, I owned and showed the Pennsylvania State Cow & Calf Junior Champions... somewhere in the 80s:-) No computer then to record these momentous occasions so I'll have to detail that later.

For several years in the early 90s I Captained the annual Will Rogers Beach Cleanup for the International Coastal Cleanup and John learned real fast how to weigh thousands of pounds of trash and organize 2000 people in moments when he came along.

I am passionate for wild and exotic animal rescues especially the Wildlife Waystation for allowing us the privilege of being part of their team.

Hopefully I will continue scuba diving with my husband for the rest of my life.

My Spirit Guide, described by Candyce, appears in ancient garb with long, straight dark hair. She is adamant that I have much to learn.

Now - on to 15 recently discovered blogs in no particular order.... oh there are so many I enjoy.... decisions, decisions!Check these out!!!!!!!!!!! You will be glad you visited.

He has been ill for many years, starting with lymphoma,
and now a rare type of leukemia, called Myelogenous.

I received the news, while visiting in Israel, that I am
a PERFECT match. I jumped out of my seat and started to dance the hora,
thanking God, mother earth, the universe and all my friends who prayed for us.
Terry taught me how to read the psalms, Sandy came to temple with me,
Julie accompanied me to the Wailing Wall, in Jerusalem, where I put a
note in for Brad and placed my hands on the stone, feeling the vibrations. It
was time to come back to the USA. With a phone call the ticket was
changed and I am here. My brother's white and red blood cells and platelets
have risen, after receiving many infusions and is home with his family for a
few days. I will start to receive "booster" shots, which will turn my
super duper bone marrow into even a more enhanced product, leading us to the donation,
which takes place next week, which my brother will receive the following
day.

The harvesting begins. My job is a
breeze and I will tell you all about it in my next message. My brother has a
very long and rough road, but he has many angels walking with him now. thanks
EVERYONE. B'ahava and Nameste.

Monday, August 8, 2011

First, I strongly disagree with the decision made by the
mother. Her son could tell her how he
felt; how he loved her; if he was in pain; if he was happy. I know his pain by his cries. I know his happiness by his smiles and
noises. She had more of a DIRECT
relationship with her child than I will ever have, yet she felt it was not
enough. They referenced debt as a reason
she took his life. I would give
everything I own for a moment where Riley could speak to me, or even smile
(Riley's Smile) and know it was out of true joy and not a chemical response to
all his drugs or even a fart that was funny (but that would be funny). So in sum, I disagree with the choice she
made.

Still, I know my husband and I have been there. There are moments in time, too many moments
where the decision she made would be the easy one. My husband has prayed for the end of my son's
pain, as have I, more than we care to or even can share.

I think in reading the article there are things that we can
all take away from it, whether you have a disabled child or not...

1.)The first "what to take away from this"...
Don't judge others. If they are carrying
"one pound of weight" or "1000 pounds of weight" everyone
is different and over time, it all feels like 100,000,000 pounds.

2.) I saw she was a single mom. While the article didn't go into her
relationship with her parents, the $10,000 check in the mail was extraordinary. I am blessed to have a mother who, while due
to age cannot hold my child, loves him and supports him in MANY ways. For many, even if support is there, it is
not always enough...The second "what to take away from this"...A
small act can go a long way...If you know of a parent of a special needs child,
whether married or single, you can ask how they (the child or parent are
doing)... This is support. But,
remember, don't judge... by society (and family) there is too much judgment in
special needs kids and families. Just
ask how are you? and listen. Being shunned by part of society, is
isolating. Just listening is often a
moment of respite/help.

3.) I had mentioned earlier about how her son could
communicate and mine cannot. I probably
portrayed this as selfish. It wasn't as
much that as, honestly, jealously.
Regardless, my "thing to take away"... Appreciate what you
have with the one you love, no matter what the occasion.... My husband had a
"lost" father (drugs, jail, confused, alcohol, barely saw him as a
child). His dad too took his life. Still, after all these years my husband will
share many moments he had with his dad.
They were VERY brief moments, during hard times for them both. Still, good moments. My third "what to take away from
this" is hold on to the moments you have with those you love.

To summarize, she could no longer carry the weight of what
she was facing. She had support but was
alone too much, perhaps? Perhaps no one
truly listened. I/we will never
know. She felt she could not give her
son enough.... what parent special needs or
otherwise has not felt that way.

I am looking for an end to this post but cannot find one. I guess my end to this post is that it is not
my last. The Barnhard family found their end. My "end" will come when either
"special needs" ceases to exist or when I can no longer champion the
voices of those with special needs or those who care/love them.

Most parents feel a sense of relief when their children return to the classroom. As a special needs mom, I have a dread for Riley, my non-verbal, non-ambulatory child being sent out without me to protect him.

I am grateful as well. The constant watchfulness of the Summer, the long hours feeding, holding him, providing therapy and being trapped indoors because our Florida heat is too much for my child are finally over. My guard can finally come down for a moment. I can linger a few moments over my coffee and return to the gym. Perhaps find a little sanity.

New 1st and 4th graders.

Curiously, my de-stress became John's stress. He took this picture because it amused him and had every intention of carrying the load into class for Ronan. The chaos of the morning left staff demanding parents clear away cars as quickly as possible which left Ronan alone in the gymnasium with his pile of goods. Now, he cannot forgive himself for not seeing the entire production through, especially given the panic on his child's face as he left.

John's wannabe Facebook post:

John wouldn't post this (even though I said he could) out of
fear of my not sleeping with him again (married 15 yrs and disabled kid: like
that would happen!)... his draft post:First
day of school and apparently after years of rift the Lee County bus sys.
learns.... (John: how was the bus today?) (Me: good, in fact the bus driver
wouldn't even make eye contact and barely talked to me) (John: So your
reputation precedes you and they finally learned).

Friday, August 5, 2011

Most places
I go, someone comments to me, "I love your purse!" This always brings me an inward laugh as I
thank them for the compliment before moving on.

The evolution of my handbags.

Fashion
escapes me. John has never cared and
likely prefers that I not be spending readily on clothing and accessories. Yet there is one area of this lack of style
that did need improvement in his eyes. Early
in our marriage, John announced that I should never again select my own handbag
again. In future either my mother or
himself should do that for me.

Fine with
me. It never mattered anyway as long as
it suited my purposes.

When Riley
came along and I was spending a great amount of time in hospitals and doctors'
offices (yes, even more than now), I carried a tiny wallet sized purse on a
long strap. This was a stylish, I
assume, Brighton bag gifted to me by my mom.
It suited me as I never carried much and didn't want anything in my way
as I carted Riley around. It did not
even have room for my car keys which dangles from my pocket or the phone shoved
in the back of my jeans.

Years later,
my mother decided to replace this bag with a dark red leather backpack style
handbag. This bag, goes everywhere. I sling it over my back or the wheelchair and
stuff every necessity and list possible deep into the main pocket. Occasionally, I will treat the leather. Somehow, this has become the ultimate mommy
purse which swallows up everything. I do
not even remember the designer name though I am certain it is a popular one and
well made.

For two months I blamed my husband for the loss of our
camera lense cover. He looked
everywhere. Even admitted (as a good
husband should) he had it last. One day
when cleaning out my purse, it was found in the bottom of my purse.... story
continues.... Ronan lost his pencil sharpener for over a week (driving us all
crazy looking for it). Jokingly John
said to Ronan "Check mommy's purse".
About an hour later Ronan whispers in John's ear "I looked, it
wasn't in mommy's purse"

The new
school year for Lee County begins this coming Monday. The organizing and shopping has been
complicated. I do not take Riley out
more than necessary, errands are especially avoided for obvious reasons.

Somehow I
have managed to gather the majority of the required supplies for Ronan; Riley's
list definitely needs work. Ronan and I
surveyed his pile comparing it to his list received from the school. Some things needed attention and organizing,
among these was "sharpened
pencils." I instructed Ronan to
locate his manual red pencil sharpener and sharpen his school pencils.

"Where
is the sharpener?" Ronan asked.

This seemed
obvious to me, "Check your desk and the pencil box where you keep
it."

"It's
not there. I looked everywhere." I refuse to replace something we already
possess. This was an unsatisfactory answer and over the
next several days we searched for the missing bright red sharpener.

All this summer we have also missed a camera lens cover. For two months I blamed my husband for the loss of our
cover. He looked
everywhere. Even admitted (as a good
husband should) he had it last. One day
when cleaning out my purse, it was found in the bottom of my purse.... meanwhile the search for the pencil sharpener continued (driving us all
crazy looking for it). Jokingly John
said to Ronan "Check mommy's purse".
About an hour later Ronan whispers in John's ear "I looked, it
wasn't in mommy's purse."

So, I have
become the massive purse toting mommy.
Who else have I yet to discover through my sons' eyes?